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Editors: Hoyt, Nicole, Liza and Cory. Contact us at intheloop@mayo.edu.

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April 30, 2015

Fishing for Answers, and Hope in Battle With Rare Disease

By In the Loop

Ed Shawley had to give up fishing to search for answers and help for a rare neurodegenerative condition called multiple system atrophy, which he describes as being like having ALS, multiple sclerosis and Parkinson's disease all wrapped up into one.

Ed Shawley loves to fish. So much so, that several years ago, the La Crosse, Wisconsin, native decided to make it his career, launching a guide service so that he could share his passion and expertise with others. But last year, that came to an end after Ed was diagnosed with multiple system atrophy, a rare neurodegenerative disorder that he recently told the La Crosse Tribune is like having ALS, multiple sclerosis and Parkinson's disease all wrapped up into one. "It completely changed my life," he tells the paper.

Diagnosed two years ago, Ed continued to fish and guide for as long as he could, but he was forced to give it up when balance issues that initially led to his diagnosis began to worsen and falls became more frequent. "I almost drowned last year, when I was half in and half out of the boat," he tells the Tribune of a fall last year.

Citing National Institutes of Health data, the Tribune reports that multiple system atrophy is so rare and difficult to diagnosis it's only known to affect about 15,000 people in the United States. And the long-term outlook usually isn't good. "The disease, which advances rapidly over five to 10 years, includes progressive loss of motor skills, eventual confinement to bed, and a life expectancy of seven to nine years after diagnosis," reporter Mike Tighe writes. Ed, however, tells the paper he intends to break that mold. "I plan on living a lot longer than that," he says.

Ed tells us that his care teams at both Mayo Clinic Health System--Franciscan Healthcare in La Crosse and Mayo Clinic's Rochester campus (including his primary care physician, Edward Malone, M.D., and neurologist Gregory Pupillo, M.D.) have been doing all they can to help him do just that. "Mayo's just a top of the line place," he says. "All of my doctors have been really forthcoming with me about my treatments, and the treatments that I've been doing with them have helped immensely. It's been a 100 percent turnaround for me so far."

Ed tells us his doctors at Mayo have told him that they want to give his treatments a little more time before they give him a prognosis. In the meantime, he says he'd like to raise awareness about his condition and let others know that he's not the only one affected by it. "It's not just me," he says. "It affects everyone in my life. My wife, for one, has put her whole life on hold to care for me, and I couldn't thank her more for that."

Read more about Ed's story and fundraisers to help him in his battle in the La Crosse Tribune. And, as always, we're fishing for your comments on the In the Loop blog, where you can find tools to share this story with others.